Canadian pop megastar Celine Dion, 56, has given a health update in her first interview since her major health diagnosis.
"I haven't beat the disease... I hope that we'll find a miracle, a way to cure it with scientific research. But for now I have to learn to live with it," the singer told Vogue France in its May Issue.
Currently undergoing athletic, physical and vocal therapy five days a week, Dion disclosed that her condition indeed requires "a lot of work."
What You Need to Know about Stiff Person Syndrome
According to John Hopkins Medicine, Stiff Person Syndrome (SPS) is a condition where a person's muscles "lock up and become stiff as a board,” usually caused by a disorder in the neurons. Commonly, a person with SPS experiences painful contractions and spasms around the legs, back, and abdomen. It can also affect the upper trunk, arms, neck and face.
Aside from muscle contraction, some people also experience other symptoms including:
- Challenges with walking;
- Persistent stiffness or rigidity in posture caused by ongoing back or trunk spasms;
- Tendency towards unsteadiness and falls due to sudden spasms, resulting in potential injuries;
- Breathing difficulties if spasms affect chest muscles;
- Chronic pain as a result of the condition;
- Increased lower back curvature (hyperlordosis) due to muscle tightness, potentially leading to spinal cord compression (myelopathy) over time.
Data shows that SPS affects one to two people in a million, mostly occurring in female patients aged 40-50 years old.
Is there a cure for Stiff Person Syndrome?
Research from the National Institute of Neurological Disorders and Stroke show that there is no cure for the progressive disorder. However, it can be assisted and controlled by proper treatment. Establishing a personalized SPS treatment plan helps address the autoimmune, neurological, visual, mobility, and pain-related aspects of the syndrome.
Dion refuses to let the condition define her
Dion first revealed the news of her condition in December 2022. By May of the following year, she had to cancel numerous scheduled shows for 2023 and 2024 due to not feeling strong enough to tour.
Reflecting on her experience, the 56-year-old Canadian singer expressed, "The past couple of years have presented significant challenges for me.. However, I refuse to let it define me."
When asked about her plans for a comeback on stage, Dion disclosed to Vogue France that she does not have any definite answer.
"I don't know... My body will tell me," she said.
In early 2024, the singer revealed plans for a feature-length documentary to be streamed on Amazon Prime Video, capturing the "raw, intimate portrayal of a pivotal time in her personal life and career, pulling back the curtain on her journey as she overcomes an unthinkable diagnosis," according to Jennifer Salke, Head of Amazon MGM Studios. The documentary aims to further raise public awareness about her condition.
"During this absence, I decided I wanted to document this part of my life, to try to raise awareness of this little-known condition, to help others who share this diagnosis,” she added.
- Rachelle Tonelada
